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o2bhealthy
o2bhealthy Member Posts: 2,101
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

I feel like an over concerned idiot and it is probably nothing but from my first dx I have always though my cancer would come back.   After tx was done for BC and I was told I was cancer free, I asked for scans.  I was told no, it was not warranted for my early stage BC.  Not being one to take 'no' for an answer, I had a thermography scan done.  Long story short, two months after completing my 1 year of Herceptin I was dx'd the Thyroid Cancer.  ThyCa was a walk in the park compared to BC.  

Flash forward another 6 months.  I have been tired, bone tired, and a bit apathetic.  My right implant feels...weird.  It feels like it is flipping around in my chest and when it moves it rubs (scrapes) against my chest wall.  I also have been having hip, leg and bone pain in my right leg over the last few months.   Once again, I turned to Thermography to check to see if it show's anything worth bringing up at my next appt with my in July. 

I am still waiting for the report but the tech & I did notice definite temperature (heat) variance behind the right implant.  There were also a hot spots in my lower back and both legs with my feet showing very cool.   All of this can be explained away.  Lower back, sciatica has been acting up.  My implant has been rubbing against my chest so it is no wonder it is showing inflammation.  My legs and the symptoms are showing classic signs of phlebitis (DVT). 

So why am I so worried???

I just saw this recent study on bc.org Inflammatory Marker May Predict Breast Cancer Outcomes http://www.breastcancer.org/symptoms/testing/new_research/20110603.jsp

In November, just before my ThyCa surgery I had a CRP test ran.  It was 3.76 (considered high risk for cardiovascular disease).   My GP advise me to take an aspirin a day, my onc said nothing.  Added to everything else and this over all feeling of doom and I am starting to get pretty worried. 

I feel like a dork but my DH does not want to even discuss the remote possibility of a recurrence and I am scared...

Anyway thanks for listening.

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited June 2011

    Oh Michelle!! I hear you and am sending gentle {{{HUGS}}}. I can't blame you for worrying. I worry with every new ache/pain. I would write down the aches/pains in a journal to document how long they last then when you see the MO next month, take it with you and make him scan you. Prayers for you gal pal.

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited June 2011
    Thanks BarbaraA, I hate journaling but it is a good idea Laughing
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  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2011

    Michelle, would it possibly help you to take all of your records to a new medical team for a review and evaluation?  I don't know where you've been treated, but I know there's a Mayo Clinic in North Scottsdale, and assuming you haven't already been there or to the University in Tucson, maybe it would be worth a trip to have a fresh set of experts take a look at everything and hopefully send you off with reassurances.  I know more checking and testing is probably the last thing in the world you want to do, but if it could ease your fears and give you peace of mind, it might be worth the investment of time and energy.  Just a thought...

    I hope you're safe from those AZ wildfires.   Deanna

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited June 2011

    Deanna - thank you, we are well away from the fires!  I am already researching the Mayo Clinic in Scottsdale and have been gathering all my records together.  Do you know of anyone specific to ask for?? I am waiting to see what the radiologist says regarding the thermogram before jumping the gun.  I have not been real pleased with my onc but finances being what they are I have been disinclined to go looking for a new one...  bad news/good news/bad news scenerio; my hours are being cut starting at the end of the month/I'll have more time for doctor appointments/but will have no money to pay them Undecided

    I really do need some peace of mind and have not been happy with my onc for a long time...

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  • mmm5
    mmm5 Member Posts: 1,470
    edited June 2011

    o2b

    I live in Sdale and see Dr. Jefferey Isaacs, he is rated number 1 in AZ he takes all plans. You could try to get into see him, I also go to UMC in Tucson for the bisphos study and see Dr. R. Livingston who is know nationally and is the best Dr I have ever seen. Look into both they both take insurance and are great. As far as your symptoms they can all be part of the lack of estrogen, at 2 years I felt like SH#$@ too. I hated it all and was looking at different options. I had severe sciatica, neck issues, insomnia and felt generally unwell. Everything to me was a sign of recurrence.

    At about 3 years I started worrying less (not entirely) but it got better I got on a low sugar diet do hot yoga and feel 90 percent better. A lot of those pains can be related back to worry and anxiety and the way we hold our body and lack of estrogen. I would have one good thorough 2 year appt and then work on your health and letting go. I totally understand where you are and can tell you it will get better. 

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  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2011

    Michelle, I don't know anyone @ The Mayo, but I know there are BCO members who have been treated there.  Maybe start a new thread asking for recommendations?  You might also call them and ask if they have an onc who specializes in bc.  Or check their website, which may note each doc's areas of specialization.  Then call and explain your situation & concerns, as well as the fact that you live several hours away. If you could arrange to send your records ahead, they might be able to schedule any recommended tests on the same day as your app't, to avoid the need for additional trips.  

    No doubt worrying about medical bills is a huge concern, but worrying daily that something's being missed becomes a real QOL issue, and, because our thoughts are so powerful, could possibly even contribute (IMO) to a future recurrence.  Hopefully seeing a new onc will go a long way to ridding you of these fears.    Deanna

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited June 2011

    mmm2- thank you for the recommendation.  I have tried so many different things to feel better, spent $$$ with NP and looking into alternatives. I was really ready to move on after finishing Herceptin but then got hit with ThyCa and I think that is what put me over the edge.  My onc is 'supposed' to be the best on N AZ and she is nice enough but I don't feel like she really listens to me or treats me like a whole person (she has barely even addressed the ThyCa since that dx).  I realize she is extremely busy but I don't want a distracted onc who doesn't even read my file before my appointment or a PA who doesn't note in my file the last phone conversation I had regarding stopping tamoxifen.   I have doc's spread out all over the place and I really don't think they communicate well with each other.    

    I am thinking a comprehensive BC center would be a good next step for me. 

    Deanna - if you only knew how hard it was for me to even start this thread...  I am a thread killer so starting my own was difficult to say the least.  I try not to post on new thread for people really desperate for advice/support because I am terrified that they will be left hanging after I post...

    When the time comes I will definitely try to ensure that we can do as much as possible during each trip because it is time consuming and expensive to drive down to Phx and miss work.   QOL has become a real issue for me, I also think I am a bit depressed because I really thought I would be in a different place both physically and emotionally by now.  

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  • jc3win
    jc3win Member Posts: 61
    edited June 2011

    Michelle- I am right at the 2 year mark as well and I could have written your exact post (except the thyroid cancer - wth). I still worry too much. I think that this anniversary (next wed. for me) is really bothering me. I consider my cancer "slow growing" so I am just picturing it getting big enough now to notice, you know? I have always thought it will come back. I so want to let go of those thoughts. I hope that we are like  mmm5 and get stronger and more confident in this next year. I KNOW that I need to eat better, lose weight, start yoga and stop drinking alcohol...

    I just want to "get over" cancer.

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited June 2011

    jc3win - knowing we need to make lifestyle changes and doing it are two different things aren't they?   I quit smoking a week before my initial dx.  Oh man was that hard!!!! I am not an excessive drinker but I do enjoy and occasional drink or two.  I have completely changed my eating habits, no more fast food, no more processed junk, cut back on red meat, cut sugar consumption by 3/4,  etc... My body does not like this new diet and when I do fall off the wagon and eat crap foods, my bowls seem to function better, go figure!   I never really had weight issues in the past so I have NO CLUE how to handle this additional 40 lbs put on during tx and my new diet doesn't seem to help either. 

    It is hard to motivate with so much conflicting data out there...I just want to 'be done' with this whole cancer trip too.

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited June 2011

    Well I got my results and there is "no significant thermal changes observed...from previous evaluation.   Thermal patters & temperature differentials has remained stable....no indication of physiological tissue changes.   There are multiple superficial varicosities overlying the lower extremities and inflammation is noted the the right upper back."

    There were no recommendations other then the usual follow-up yada yada...

    Don't get me wrong I am happy that everything looks good but I am still frustrated.  I asked my DH last night if he thought I was acting like Don Quixote and chasing windmills...

    Oh well, I see my onc end of July.  I really need to grow a set of balls and TALK to her, maybe I'll write it all out and send it ahead of time. I am just not happy with the quality of care and do not feel like I am being monitored enough...

    Ughhhhhhhhhhhhhh, I hate confrontation!!!

    Thank you BarbaraA, Deanna, mmm3 (Michelle) and jc3win for your support and input!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2011

    YaY for great news, Michelle!  I think what mmm5 said above is so true.  @ 2 years out, the fear of recurrence is constant, and each unfamiliar body ache has us convinced our bc probably has returned.  And I can see how that would be even more so for you with a thyroid cancer dx.  

    One of the best things I've found to start moving beyond the fear is to change the scene, like getting away for a weekend, where you'll be distracted by new experiences, and you're not constantly reminded of bc.  We've done it several times in the past year, and each time I come back feeling a bit stronger and more in balance.

    I think sending a pre-app't. email to your current onc is a great idea.  Then, if you still don't feel your concerns are getting the attention they should, you can look elsewhere for someone you feel better about.     Deanna

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  • sheila888
    sheila888 Member Posts: 25,634
    edited June 2011

    Michelle...I can relate to you yes after all these years i still worry.

    CRP test.....I get that every 3 months because Im on cholesterol and BP medication.

    It's not really a test by itself. Is it called HDL/chol ratio?

    I don't know how they calculate it but it goes with your levels of Total Cholesterol, HDL, LDL and triglyceride

    It changes all the time.

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited June 2011

    Thanks Deanna - I am working on my letter to my onc today...

    ((((Shelia)))) thanks for the support.  The CRP is a blood test for Cardiac Reactive Protein, it is a separate test specific to that protein.  No one has run a Lipid panel on me in over a year (that's the the one looks at the cholesterol levels, HLD, LDL, etc...)

    Not so worried anymore about the cancer spreading since the thermogram came back with no significant changes from the prior scan.  I am working on getting a consult with a new PS to address the implant issue.  Thankfully whippetmom PM'd me with some referrals so I am feeling better having some direction...

    Thank you all for your support!

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  • lrr4993
    lrr4993 Member Posts: 937
    edited June 2011

    Michelle - I don't have an answer to your original question, although it sounds like you have resolved that at this point.

    I wanted to post to ask you about thermography.  I have read a little about it but not much.  It sounds interesting and I have debated doing it myself.  What are your thoughts about it?  How does it work?  Any research you have done that you can share?

    Thanks!

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited June 2011

    Lisa, Hi!! As you can see by one the  "Breaking News Links" that keeps circulating on this site the FDA does NOT approve of thermography as a replacement for mammo's.  That being said, I will admit that if my onc's won't do CT/PET scans for me, this helps me with peace of mind.   My first Thermography scan found my thyroid cancer (well it recommended further evaluation that found the TyCa).  My ENDO was shocked at how early ThyCa was found as it was only 5mm and he said I probably would not have had se's for a year or more.  Since we did the full body last Sept, we had a comparison for this scan so it was easy to tell if there were significant changes.  

    Now my thermographer is always saying to avoid all other scans and just do thermography...I think in conjunction with traditional medicine this can be a good tool as it does show function vs physiology and can help pin point areas of concern so that our doctors don't have to go on a seek and find mission. 

    I hope that helps!!

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  • lrr4993
    lrr4993 Member Posts: 937
    edited June 2011

    Thanks Michelle.  I would never do it as a replacement of traditional screening, but was thinking about it as a supplement.  I have read several things about early detection with the thermograph, which it sounds like your experience is consistent with that.  I am going to look into it some more.  I have also read that its value/accuracy is very largely dependant on the qualifications of person reading it.  How did you go about finding someone you trust?  I assume most medical doctors do not do this.

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited June 2011

    The person in town who does the thermography is a 20 retired x-ray tech.   She is also a BC survivor and found her cancer through thermography.  She is a bit over the top in her endorsement but she also has researched the Dr.'s who read the scans and feels they are very qualified.   Where are you located???  PM me and I'll ask her if she has any recommendations in your area.

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